autism

Babysitting a nonspeaking four year old

Question from an anonymous reader:

I regularly babysit a 3 (almost 4) year old who has Autism. He does not speak, and he doesn't yet have a reliable alternative form of communication like signing or AAC, though he probably will soon.

 I have a lot of friends and two cousins who have Autism, but they all speak or sign. I find it difficult sometimes to understand what the kiddo in question is thinking, or wants, and I wondered if you or any of your followers have any first hand tips or advice on how I could better understand him? 

I know everyone is different, and I'm learning to read things like his body language, but I wondered if you/any of your followers who don't speak or spoke later than most remember anything that helped them get across what they meant when they were younger, or things adults did that were especially helpful. He doesn't have the coordination to sign or draw what he wants yet, being so little. I want to help him feel less frustrated and to be as good a babysitter as I can be.

Realsocialskills answered:

For the sake of readability, I’m going to call your cousin Anthony in this post. 

The first thing I’d say is: Listening to Anthony matters whether or not you succeed in understanding him. You may not be able to figure out what he is thinking, he may not yet be able to tell you — but you *can* treat him as a person who has thoughts and feelings worth listening to. That matters in and of itself, and it also makes successful communication much more likely.

Learning to communicate is really hard, even for typically developing kids. (Which is a reason why two year olds have so many tantrums, and why older kids usually grow out of that.) In early childhood education, a lot of what kids learn is that it’s possible to communicate in ways that others can understand — and that words are usually a better option than freaking out. One of the main ways early childhood educators teach kids these skills is by listening to them, and by supporting them in understanding the feelings they’re having. 

Kids with communication disabilities have more trouble learning to communicate in ways that others can understand — and they also often have more trouble learning that communication is even possible. Disabled kids need *more* exposure to adults who want to listen to them, and *more* support in understanding their feelings — but they often get less of both. Their feelings are often ignored, and their communication is often treated as nonexistent. 

All too often, kids with disabilities learn young that no one wants to listen to them. They often try their best to communicate, only to have their attempts interpreted as random meaningless noise or deviant misbehavior. When nobody listens, it becomes really hard to keep trying. One of the best things you can do for Anthony right now is help him not to give up.

It’s important to keep in mind that Anthony is a person with a perspective of his own. Our culture socializes us to see people with disabilities as having needs, but not thoughts or feelings. That implicit bias goes really deep for almost everyone, including AAC experts and long-time disability rights activists. Be careful to treat Anthony as a person with thoughts, feelings, and questions. This is a profoundly countercultural attitude. You can’t assume that it will happen by itself; you have to do it on purpose. (I did a presentation on this for medical providers a while ago which may be of interest.  )

Some specific things you can try:

Say explicitly that you’re trying to understand, eg:

  • “I don’t understand you yet, but I’m listening”.
  • “I’m not sure what you mean, but I do care”.
  • It doesn’t go without saying — and sometimes saying it makes a big difference!
  • Look for actions that might be intended as communication:
  • Does he point at things? Lead you to things? Flap differently under some circumstances?

Make a guess about what you think he might mean, and act on it.

  • It can be worth using words to describe what you’re doing, eg:
  • “I think you want the book because you’re looking at the book. I am getting the book”.
  • “I think the light is bothering you because you’re covering your eyes. I am turning off the light.”
  • He can’t read your mind, so it might not be obvious to him that you’re acting on what you think he’s doing — so tell him!

Name feelings you think he might be having, eg: 

  • “Susan took your truck. You are mad.”
  • “You like the marbles. You are happy.”
  • “Jumping is so fun!”
  • “You don’t like that texture.”
  • (Nb: Telling *adults* what they are feeling in these terms is usually *not* a good idea, but it’s a pretty common method used to help little kids learn about feelings — *if* you know with reasonable certainty what their feelings are.)

Ask questions, and offer choices, eg:

  • “Do you want the red shirt or the blue shirt?”
  • “Should we read the princess book or the truck book?”
  • “Should we go to the swings or the sandbox?”
  • Even if he can’t respond, being asked matters — it shows him that you care what he thinks, and that there’s a reason to try to communicate.

It can help to make the options more concrete, eg:

  • He might be more able to tell you which shirt he wants if you’re holding both of them. 
  • Or if you’re holding one in one hand and one in the other.
  • Or if you put them down in front of him.

If he responds to your question in a way that you think might be communication, respond to it as communication: 

  • Eg:  “You pointed to the dragon book, so we’ll read the dragon book”.
  • Or it may make more sense to just start reading it. Sometimes that works better than inserting too many words. 
  • Eg: “Ok, we’ll go to the park”.

You can also try yes-or-no questions:

  • “Do you want to go to the park? Yes or no?”
  • “Do you want to read the dragon book? Yes or no?”
  • “Is the dragon scary? Yes or no?”
  • “Is the king silly? Yes or no?”
  • Again, even if he can’t respond in a way you understand, trying matters.

You also might be able to teach him to point to things:

  • Pointing doesn’t require motor skills on the same level that writing and drawing do.
  • Again, in the two book example, you can ask him to point to the one he wants.
  • You can also show him pointing by doing it yourself, eg:
  • Take two books, and say “I choose the dragon book”, point to it, then read it.
  • Take two books and ask him “Which book do you choose?”
  • (Etc: It can take some time and trial and error to figure out how to teach this in a way that sticks, but it’s often worth trying.)

If he has a way to communicate “yes”, and “no” or choose between options, you can also check your guesses more directly:

  • “I think you said park. Am I right?”
  • “Did you say park, or something else?”
  • “Are you trying to tell me something, or are you playing?”

Remember that words can be communication even when they’re unusual: A lot of autistic people use idiosyncratic language to refer to things, or repeat phrases they heard somewhere else – in a way that they may or may not mean literally. Here’s a method for noticing when repetition is communication , and some thoughts on listening to folks whose speech is unusual.

Give him time to process and respond:

  • The standard teaching advice is: When you ask a question, wait at least seven seconds before you say anything else.
  • This feels a little unnatural — it can feel like a *very* awkward pause, and it can be tempting to jump in and say more stuff to clarify.
  • But if you say more stuff to someone who is thinking and formulating their answer, it tends to just give them *more* stuff to process. 
  • So give him time to respond — and be aware that autistic people often need longer to process and respond.

If you have an iPad you’re willing to let him play with, iPad use can really help some kids with motor skills and learning communicative cause-and-effect.

  • Most kids learn pretty quickly how to scroll through select the app they want, and that skill often transfers.
  • Most kids that age like Endless ABC, a really fun pre-literacy words-and-spelling app. https://www.originatorkids.com/?p=564
  • (That app also builds an association between interacting with a touch screen and making meaningful sounds)
  • You can also try the Toca Boca apps — a lot of kids like those, and some, like Toca Hair Salon, don’t require particularly strong motor skills.
  • Often, the best way is to play with the app together — eg, you show them how to drag the letters around, then offer them a turn.
  • Or help them out when they get stuck, without taking over.
  • Or say things like “which color should we pick? How about purple?” and see how they react.

Don’t expect AAC to fix everything:

  • Everything in this post still applies once he gets a device or a system.
  • An AAC device is just a tool. It’s one mode of communication, which might be useful for him under some circumstances.
  • Having an AAC device will not make him instantaneously able to communicate using words in the way that typically-developing kids his age do.
  • While some people learn to use an AAC device fluently very quickly, that is rare. 
  • Most people who use AAC because of a childhood speech delay take a long time to learn it.
  • And in any case, giving someone a tool doesn’t cure their disability. 
  • An AAC user with a communication disability still has a communication disability, and disabilities that interfere with speech sometimes also interfere with language. 
  • Even people *without* language disabilities tend to take a while to learn, for all the same reasons that typically-developing kids take a while to learn how to use words to express themselves. Communication takes practice.
  • (And also, all existing AAC technology has significant limitations and difficulties. It’s easier for typically developing kids to learn to speak than it would be to learn to use AAC, and having a speech disability doesn’t magically make AAC use easy.)
  • AAC implementations can also end up treating AAC use as an end in itself and forget that the point is to support communication. 
  • For most AAC users, AAC is one communication mode among many they use, and it’s not always the best one in every situation — eg: pointing to a banana can be a *much* more efficient way to communicate than scrolling through a device and finding the “I” “want” and “banana” buttons.
  • If Anthony gets an AAC system, he will still need you to put effort into listening to him, and he will still need you to take all of his communication seriously.

Remember that disability isn’t bad behavior, and don’t be mean:

  • Don’t ignore his communication in order to force him to talk or use a system.
  • The best way to encourage communication is to listen!
  • He’s not struggling to communicate because he’s lazy; he’s struggling to communicate because he has a disability.
  • He’s doing something really hard, and he’s in a hard situation, and that needs to be respected and supported.
  • You don’t need to introduce artificial difficulty; he is already experiencing more than his share of the real kind.

Anyone else want to weigh in? What is helpful for effective communication with a nonspeaking four year old? You can answer using my contact form.

 Tl;dr If you’re babysitting a kid who has trouble with communication, the most important thing you can do is listen to them. Scroll up for some specific options. 

Image description: Text "Kids with communication disabilities need to know that you care about listening to them", next to a picture of a young child and a picture of some plastic duplo-style building blocks.

Image description: Text "Kids with communication disabilities need to know that you care about listening to them", next to a picture of a young child and a picture of some plastic duplo-style building blocks.

Autism stereotypes and Not Autism Syndrome

People who have rare developmental disabilities are often misdiagnosed with autism.  This happens in part because a lot of disabilities look similar in early childhood. When kids with undetected rare genetic conditions start ‘missing milestones’, they are often assumed to be autistic. 

When people are assumed to be autistic, autism stereotypes get applied to them. They’re often assumed to be uninterested in people and communication, and they’re often put into ABA programs prescribed for autistic people. They face the same kind of degrading and damaging misunderstanding that autistic people do.

When advocacy organizations address the issue of misdiagnosis, they tend to say some form of “It’s important to distinguish between autism and Not Autism Syndrome, because demeaning autism stereotypes only accurately describe autistic people.” 

Here’s a Rett Syndrome example: “The child with RTT almost always prefers people to objects, but the opposite is seen in autism. Unlike those with autism, the RTT child often enjoys affection.”

And a Williams Syndrome example:

“Unlike other disorders that can make it difficult to interact meaningfully with your child, children with Williams Syndrome are sociable, friendly and endearing. Most children with this condition have very outgoing and engaging personalities and tend to take an extreme interest in other people.”

Statements like these suggest that the problem with autism stereotypes is that they're applied to the wrong people. The thing is, demeaning autism stereotypes *aren’t true of anyone. We all have feelings and thoughts and the capacity to care about things and relate to other people. Accurate diagnosis matters, but not as a way of sorting out who is and isn't fully human. We're all fully human, and no one should be treated the way autistic people are treated. We shouldn't pass around stereotypes, we should reject them.

On solving the right problem

Not every problem disabled people have is a failure to understand social situations.

Sometimes the problem is that our bodies are considered socially unacceptable.

No amount of social skills training will change our bodies.

No amount of social understanding will make typical movement and typical speech physically possible.

No matter what we learn, bodies and brains matter. We’re still disabled when we understand things.

It’s ok to be disabled. It’s not ok to be bigoted against disabled people.

If we want to get anywhere, we need to make sure that we’re solving the right problems.

Autistic people can have friends

One reason I started writing this blog is that I got tired of seeing social skills programs teach autistic people that they have to become normal in order to have friends.

It’s not true. There are a lot of autistic people who have friends without becoming remotely normal. Oddness and friendship are entirely compatible.

You can be autistic, seem autistic, and have friends who like you and enjoy your company.

Some people won’t like you, and that’s ok. Not everyone has to like everyone.

Some people will dislike you because they are bigoted against autistic people. That’s not ok, but it doesn’t have to ruin your life. Ableists don’t speak for everyone. Those people aren’t your friends. Other people can be.

You’ll probably always face ableism. Trying to be normal probably won’t make that go away; accepting yourself probably won’t make that go away either. You don’t need to change the whole world in order to have friends.

You can have friends as the person you are, in the world as it is now.

A problem with “behavior is communication”

In certain contexts, just about everything a disabled person does will result in someone following them around with a clipboard, taking notes on their behavior, and designing a behavior plan for them.

This is often called ‘listening to what the behavior is communicating’ or ‘keeping in mind that behavior is communication.’

I know that nothing I’ve ever done was intended to communicate ‘please put me on a behavior plan’. If anyone asked me, they would know with certainty that I don’t want them to do anything of the sort.

I’m not alone in this. Very few people would willingly consent to intense data collection of the kind involved in behavior analysis. Far fewer people would willingly consent to the ways in which that data is used to control their behavior. 

A lot of people never get asked. People do these things to them that very few people would willingly consent to — without asking, and without considering consent to be a relevant consideration.

Somehow, an approach that involves ignoring what someone might be thinking gets called ‘listening to what is being communicated’.

That is neither ethical nor logical. Behaviors don’t communicate; people do. If you want to understand what someone is thinking, you have to listen to them in a way that goes beyond what any behavior plan can do.

Collecting data is not the same as listening, modifying behavior is not the same as understanding what someone is thinking, and disabled people are fully human. 

We're autistic, we're human, get used to it

Some dehumanizing descriptions of autism are negative. For example, some people believe that we are incapable of love, or incapable of imagination, or incapable of understanding anything of importance.

Some dehumanizing descriptions of autism are positive. For instance, some people believe that we are incapable of lying, incapable of being manipulative, and that we always say exactly what we mean.

Autism doesn’t work that way. We are fully human, for better and for worse. We are fallible. We make communication mistakes. We don’t always know what we mean, and we don’t always express ourselves clearly. For instance, sometimes we say things that feel direct but that are actually very confusing. That’s human.

We are capable of treating others well, and we are capable of treating others badly. We are capable of caring about others, and we are capable of indifference. We are capable of being kind, and we are capable of being cruel.

Autism means having disabilities that can affect how we communicate, how we move, and how we understand things. Autism doesn’t make us better than other people, and it doesn’t make us worse. We’re not subhuman, and we’re not superhuman. We’re just people.

Autistic people don't all want boring jobs

Lately, I’ve been seeing a lot of variations on a story that goes “Autistic people love detail, and it makes them naturally well suited for repetitive jobs that most people find intolerably boring.”

This is usually said with great fanfare, and described as a step away from stigma and towards celebration.

But — autistic people don’t all have a convenient love of tedious tasks. Some of us find them as boring as everyone else does.

This model of “autistic strengths” celebrates us doing jobs everyone else hates. It has no room for us to pursue jobs that others want. We’re supposed to stay in a special place for special people, doing the boring tasks the ideology says we love — and making no trouble for the normal people who do the interesting jobs.

This isn’t ok, and it isn’t acceptance. Some of us like things that others don’t, but none of us should be forced into a box. Autistic people have the full range of interests, talents, and skills that anyone else does. We shouldn’t be tracked into jobs based on stereotypes. We have the right to decide for ourselves what to pursue.

Point of autism testing?

Anonymous asked:

What’s the advantage of getting formally tested for Autism? My Psychologist pretty much just offhand diagnosed me with Aspergers, though I’ve know I had AS for longer than that. Anyway, since my family and I already know, is there any reason I should formally test for it?

realsocialskills said:

I can’t tell you whether it’s a good idea for you or not.

There are several reasons that I think it may be worth considering.

One is that external validation might matter to you more than you think it does. I knew I was autistic before I was diagnosed; diagnosis still mattered to me a lot more than I expected it to matter.

One way is that it can matter is in your relationships with other people. If you want to talk about being autistic, being professionally diagnosed is likely to be helpful. That definitely made a big difference for me.

Another way that autism testing can be helpful is that it can involve testing for other things as well. That’s worthwhile partly because it’s possible that another diagnosis fits you better than autism (that happens sometimes), and also because it’s not at all uncommon for autistic people to have additional cognitive or physical issues.

Testing can give you information about cognitive and neurological strengths and weaknesses beyond a one-line diagnosis. It can also tell you about other conditions you might have. For instance, testing can sometimes tell you:

  • If you also have ADHD
  • If you’re having motor skills problems, and what kind
  • Whether your memory is typical
  • Whether you’re having reading comprehension problems
  • And various other things potentially worth knowing

All of that can be overlooked if you’re doing ok in school or if people are already attributing everything to one diagnosis. It’s good to know where you stand and what your cognitive strengths and weaknesses are. Testing isn’t always helpful for that kind of thing, but it definitely can be sometimes.

Testing can help you to get accommodations. For instance, if you have difficulty with handwriting and your testing documents that, it can get you the legal right to use a computer for writing tasks and tests in school and university. That applies to a lot of other things too. If there are supports or accommodations that you need and aren’t getting, testing might help you to get them.

This is also true if you’re in high school now and planning to go to college soon, even if all your support needs are being met in high school without documentation. You can’t assume that will continue to be the case in college without documentation – they may well require it, and it will be easier to get what you need if you already have proof.

One thing to consider if you are under 18 (or even under 21), is that diagnosis is often taken more seriously if you were diagnosed as a minor. This can affect access to services and support if you turn out to need help later in life. (It won’t necessarily make you eligible for help even if you really need it, but it does make it somewhat more likely.) 

Formal diagnosis also can sometimes open up the possibility of trying psychiatric medication to manage some symptoms. This can also be a downside to diagnosis if it might mean that someone will make you take medication you don’t want to take. Some medication can be really helpful for some people; it can be a really bad idea for other people.

Another downside to consider is that having a diagnosis closes off some options and complicates others. For instance, autism, ADHD, and psychiatric conditions are disqualifying for US military service, even in noncombatant roles. Some other jobs or programs you might want to apply to might ask if you have any disabilities or mental health conditions (sometimes this is illegal; sometimes it isn’t). If you have a diagnosis, you will have to either lie or disclose. That can complicate some things. 

Another downside is that getting diagnosed with autism might result in people trying to make you go to behavior therapy or social skills groups. If you’re an adult, it will probably be reasonably easy to avoid doing this. If you’re a minor, people might be somewhat more likely to succeed in making you go to bad therapy. (Although that might happen anyway even without a diagnosis.)

It also might become harder to get doctors to take physical symptoms seriously. Sometimes diagnostic overshadowing means that everything gets attributed to autism even when it isn’t.

That said, I think all and all, the advantages to diagnosis outweigh the disadvantages for most people, particularly most younger people.

tl;dr Overall, I think that if you’re autistic or suspect you might be, pursuing formal diagnosis is usually a good idea. That said, it’s a very personal choice and your milage may vary. Scroll up for some reasoning.

ABA therapy is not like typical parenting

Content note: This post is about the difference between intense behavior therapy and more typical forms of rewards and punishments used with typically developing children. It contains graphic examples of behavior programs, and is highly likely to be triggering to ABA survivors.

Anonymous said to realsocialskills:

I just read your thing about people with disabilities and their interests. Don’t people do the same thing to typical children? Restrict access to things enjoyed until act ABC is completed? For example, growing up, I was only allowed to watch tv for 1 hour a day IF I finished all of my homework and schoolwork related things first.

realsocialskills said:

It’s not the same (although it has similar elements and I’m not a huge fan of the extent to which behavior modification techniques are used with typically developing children either.)

Here’s the difference: Most children actually should do their homework, and most children have interests other than television. Typically developing children are allowed to be interested in things, and supported in pursuing interests without them becoming behavior modification tools.

(Another difference: intense behavior modification is used on adults with developmental disabilities in a way that would be considered a human rights violation if done to typically developing adults.)

Using behavior modification tools for one or two things in a child’s life isn’t the same as doing it with everything in someone’s life. Intense behavior therapy is a violation on a level that it’s hard to describe.

Intense behavior therapy of the type I’m talking about typically involves:

  • Being surrounded by people who think that you’re broken, that all of your natural behavior is unacceptable, and that you need to be made to look normal in order to have any hope of a decent future
  • Having completely harmless things you do pathologized and modified (eg: having hand flapping or discussing your interests described as “a barrier to inclusion”)
  • Having those things conflated with things you do that actually *are* a problem. (eg: calling both head banging and hand flapping “sensory seeking behavior” and using the same reinforcers to eliminate both) 
  • Being forced to stop doing things that are very important to you, by people who think that they are pointless and disgusting or “nonfunctional” (eg: using quotes from TV shows to communicate)
  • Being forced to do things that are completely arbitrary, over and over (eg: touching your nose or putting a blue ball in a red box)
  • Being forced to do things that are harmful to you, over and over (eg: maintaining eye contact even though it hurts and interferes with your ability to process information)
  • Having everything you care about being taken away and used to get compliance with your behavior program (eg: not being permitted to keep any of your toys in your room)

(Behavior therapy often also involves legitimate goals. That doesn’t make the methods acceptable, nor does it make the routine inclusion of illegitimate goals irrelevant.)

Here’s an explicit instruction from a behavior expert on how to figure out which reinforcers to use for autistic children:

Don’t assume that you know what a child with ASD likes. It is important to ask a child, observe a child or perform a preference assessment. When asking a child about reinforcers, remember that multiple reinforcement inventories can be found on the Internet.

You can also simply sit down with a child and ask them questions like “What do you like to do after school?” or “What’s your favorite food?"or "What toys do you like to play with?”

When observing a child, set up a controlled environment to include three distinct areas: food, toys, and sensory. Then allow the child somewhat free access to this environment.

Watch and record the area that the child goes to first. Record the specific items from this area that the child chooses. This item should be considered highly reinforcing to the child.

Continue this process until you have identified three to five items. Remember that simply looking at an item does not make it reinforcing, but actually playing with it or eating it would.

Notice how it doesn’t say anything about ethics, or about what it is and isn’t ok to restrict access to. This is about identifying what a child likes most, so that it can be taken away and used to get them to comply with a therapy program. (Here’s an example of a reinforcement inventory. Notice that some examples of possible reinforcers are: numbers, letters, and being read to). 

People who are subjected to this kind of thing learn that it’s not safe to share interests, because they will be used against them. That’s why, if someone has a developmental disability, asking about interests is often an intimate personal question.

This isn’t like being required to do your homework before you’re allowed to watch TV.

It’s more like:

  • Not being allowed to go to the weekly meeting of the science club unless you’ve refrained from complaining about the difficulty of your English homework for the past week

Or, even further:

  • Not being allowed to join after school clubs because you’re required to have daily after school sessions of behavior therapy during that time
  • In those sessions, you’re required to practice making eye contact
  • And also required to practice talking about socially expected topics of conversation for people of your age and gender, so that you will fit in and make friends
  • You’re not allowed to talk about science or anything else you’re actually interested in
  • You earn tokens for complying with the therapy
  • If you earn enough tokens, you can occasionally cash them in for a science book
  • That’s the only way you ever get access to science books

Or even further:

Being a 15 year old interested in writing and:

  • Being in self-contained special ed on the grounds that you’re autistic, your speech is atypical, and you were physically aggressive when you were eleven 
  • Having “readiness for inclusion” as a justification for your behavior plan
  • Having general education English class being used as a reinforcer for your behavior plan
  • Not being allowed to go to English class in the afternoon unless you’ve ~met your behavior targets~ in the morning
  • Not being allowed to write in the afternoon if you haven’t “earned” the “privilege” of going to class
  • eg: if you ask questions too often in the morning, you’re “talking out of turn” and not allowed to go to class or write in the afternoon
  • or if you move too much, you’re “having behaviors that interfere with inclusion”, and not allowed to go to class or write
  • or if you mention writing during your social skills lesson, you’re “perseverating” and not allowed to go to class or write

Or like: being four years old and not being allowed to have your teddy bear at bedtime unless you’ve earned 50 tokens and not lost them, and:

  • The only way to earn tokens is by playing in socially expected ways that are extremely dull to you, like:
  • Making pretend food in the play kitchen and offering it to adults with a smile, even though you have zero interest in doing so
  • You gain tokens for complying with adult instructions to hug them, touch your nose, or say arbitrary words within three seconds; you lose two for refusing or not doing so fast enough
  • You lose tokens for flapping your hands or lining up toys
  • You lose tokens for talking about your teddy bear or asking for it when you haven’t “earned” it
  • You lose tokens for looking upset or bored

Or, things like being two, and loving books, and:

  • Only having access to books during therapy sessions; never being allowed unscripted access to books
  • Adults read to you only when you’re complying with therapy instructions
  • They only read when you’ve pointed to a picture of a book to request it
  • You’re required to sit in a specific position during reading sessions. If you move out of it; the adult stops reading
  • If you rock back and forth; they stop reading
  • If you stop looking at the page; they stop reading
  • If you look at your hand; they stop reading
  • Adults interrupt the story to tell you to do arbitrary things like touch a picture or repeat a particular word. If you don’t; they close the book and stop reading.

Here are a few posts that show examples of the kind of thing I’m talking about:

tl;dr Intense behavior therapy has some things in common with methods that are used with typically developing kids, but it’s not actually the same. Intense behavior therapy involves violation and a degree of control that is not considered legitimate with typically developing children.

When professionals assume that parents of disabled kids see ghosts

In the special needs service provision community, there is a strongly held narrative about what happens when a kid turns out to be disabled. This narrative causes a lot of problems.

According to this narrative:

  • Professionals believe that parents have a strong emotional attachment to the typically developing kid they were expecting. 
  • They are usually in denial even about obvious signs of disability, and will hold on to their fantasy for as long as possible. 
  • At some point, the parents are forced to confront their child’s disability.
  • They lose their fantasy of the child they expected, and this is emotionally devastating. 
  • In order to move on, they have to mourn the loss of the child they expected and the life they expected.
  • Parents need emotional validation and help working through that.
  • All of this is very widely believed, and I think this model causes a lot of problems.

I think the grief model is a problem on several levels:

When parents are grieving for the child they expected, it’s really hard on the child they already have:

  • Children want adults in their lives to see them, approve of them, and love them.
  • When parents are seeing ghosts, they’re not seeing their real child.
  • Children can tell when adults in their lives are looking past them. It hurts. 
  • When parents are mourning for the child they expected, they are disappointed by the child they actually have.
  • Children can tell when adults in their lives are profoundly disappointed in them. It hurts.
  • And it especially hurts when the child has no control over the things that are disappointing their parents.
  • While parents struggle to accept their children as they are, their children struggle to cope with being parented by people who do not yet find them acceptable.
  • That hurts. And it leaves scars.

Kids need support in navigating this, and they don’t often get it:

  • There is often a tendency to pretend that kids don’t know.
  • But disabled kids aren’t a separate species. They’re kids, and kids are almost always very sensitive to how adults in their lives feel about them.
  • Kids need people in their lives who see them, and not ghosts. 
  • Kids need people in their lives who can accept and value them as they are.
  • Sometimes that can’t be their parents. Or can’t (yet) be their parents.
  • But it needs to be someone. (And their parents need to understand that their attitude towards their child affects their child)
  • If you work with kids in any capacity, it is likely that this person needs to be you sometimes.
  • Looking at the real child and seeing a person matters. Seeing them and not a ghost of someone you expected matters. Making it clear that you’re not disappointed in them matters. 
  • If you can do that for kids you work with, it can prevent a lot of pain. (And can likely help their parents to come to a point of acceptance sooner.)

Further, not all parents actually feel this way:

  • The professional narrative about grief and mourning does not accurately describe all parents.
  • Parents of disabled kids have all kinds of feelings about their kids for all kinds of reasons.
  • Not all of these feelings are negative.
  • Even when parents have negative feelings, they’re not always grief. 
  • Sometimes parents feel overwhelmed and confused about how to support their child.
  • (Or worried about how to afford the things their child needs).
  • (Or repulsed by things professionals are telling them to do to their children as therapy.)
  • Sometimes parents feel ashamed about not having noticed sooner.
  • Sometimes parents feel concerned that they may have caused their child’s disability. 
  • Or any number of things.
  • Not all parent feelings are grief, and the full reality needs to be acknowledged

Parents are sometimes pressured into mourning when they weren’t already grieving:

  • The grief and mourning narrative is strong and pervasive. 
  • Parents are often expected to describe everything they’re feeling as grief.
  • Parents are often not given any support in working through the other feelings and doubts they are having. 
  • This can result in parents being pushed into a mourning process that wasn’t actually necessary for them. 
  • It is very damaging to both parents and children when this happens.
  • It is not good to grieve for the living. When it’s avoidable, it should be avoided.
  • It’s important to be careful to avoid pushing parents into adopting a grief narrative unnecessarily. 
  • (Sometimes it’s not avoidable, for reasons that aren’t anyone’s fault. But it’s often more avoidable than people realize.)

Tl;dr There is a pervasive professional narrative that says parents of disabled kids need to mourn for the child they were expecting before they can accept their real child. This isn’t always true, and parents are sometimes pressured into feeling and mourning through grief that they otherwise would not have experienced. When parents *do* mourn for their living children, that is emotionally devastating for the kids. Parents and kids both need much better support in navigating the disability acceptance process.

For another perspective on this, see Jim Sinclair’s classic article “Don’t Mourn For Us” (written about autism specifically.

Electronic books can make reading possible for people with executive dysfunction

Electronic books can be an important disability accommodation for a lot of people, including some people with normal vision. If you’re having a lot of trouble reading, or not reading as much as you’d like to, it might help to use electronic books.

There are a lot of steps involved in reading a print book. Some of these steps can be difficult or impossible for people with impaired executive function, autistic inertia, fatigue, chronic pain, or other conditions. Some difficult steps can be eliminated with electronic books. 

In order to start reading a print book, you have to be able to do all of these things:

  • Have the book in a place where it’s available to you when you have time to read.
  • (Which can involve remembering to bring with you somewhere.)
  • (And keeping track of the book and not losing it.)
  • Decide to stop what you’re doing and do a different kind of task.
  • Figure out where the book is.
  • Go get the book.
  • Avoid getting distracted by other things as you find the book or get the book.
  • Figure out where you are in the book.
  • (Which can involve things like remembering the place.) 
  • (Or using a bookmark, which comes with its own multi-step challenges like remembering that bookmarks exist and having one available.)
  • Open the book to the right page.
  • Avoid getting distracted by other parts of the book.
  • Get into a position in which you can read, which you can also sustain long enough to read for a significant among of time.
  • Actually start reading the book.
  • If you want to take notes or highlight, you also have to gather all your note-taking tools.
  • And not get distracted and forget what you’re doing.
  • And not forget where you put the book in the process.
  • That’s a lot of steps, any one of which can sometimes be difficult or impossible.
  • Using electronic copies can eliminate some of these steps, or make them easier.
  • This can be game-changing.

Some ways in which electronic copies can eliminate steps:

  • You can store your entire electronic library on one device (or synced to multiple devices). 
  • If you know where your device is, then you know where all of your electronic books are.
  • This can mean you don’t have to physically search for anything.
  • (Electronically searching to remember where you put something can be much easier.)
  • You also don’t have to remember to bring a specific book. You just have to remember to bring one device.
  • (Which can be a device like your laptop, phone, or iPad which you’re in the habit of carrying with you anyway).
  • If you’re already using your computer, you don’t have to get up to go get your book.
  • You also don’t have to change positions.
  • Being able to stay in the same position and location can make it much easier to start reading.
  • It can also be easier to remember your place. A lot of software will leave the book open to the same place as when you were last reading it.
  • Searching can be easier, faster, and less distracting than flipping through a print book. (This isn’t true for everyone, but it’s true for some people).
  • Electronic bookmarks may also be easier to use than physical ones.
  • You don’t have to look for highlighters, pens, pencils or notebooks, all of that is right there in the book-reading software.
  • Eliminating these steps can make reading a lot easier. 
  • Making it easier can make it possible.

This isn’t the right strategy for everyone; computers, phones and other devices have their own executive dysfunction pitfalls. But for some people, it makes reading much more possible. 

Tl;dr Some people have trouble reading print books, even if they have normal vision. Sometimes the reason for this is that executive dysfunction (or another disability) makes some of the steps involved in starting to read a print book difficult or impossible. (Eg: people with ADHD might get distracted looking for the book.) For some people, using electronic books instead of print books can make reading much more possible. Scroll up for some specific reasons that electronic books can help.

Question about autistics learning ASL

mellopetitone:

prosthetical:

lysikan:

m79point7:

realsocialskills:

inthedreamer001 said to realsocialskills:

I am considering learning ASL, and I recently shadowed a local class. While I like the class overall, the teacher kept saying to the students “eyes to eyes, not eyes to hands” to prompt them to make eye contact while speaking ASL. Is this a universal ASL thing? If so, are there exceptions made in the autistic/neurodivergent community? Thanks!

realsocialskills said:

I don’t know enough about ASL and Deaf culture to give you a good answer to this. I’m posting this in hopes that someone who knows more than I do will weigh in.

There are two things I know that might be relevant here:

Thing #1: Sometimes there are competing access needs. Sometimes there’s a conflict between what one group needs and what another group needs. This is often not anyone’s fault, and negotiating it can be very complicated. Sometimes there’s no easy or short term solution. 

Thing #2: There are important differences between how facial expressions work in ASL (and other signed languages) vs English (and other spoken languages.) Facial expressions are much more important in ASL than they are in English. 

In spoken language, most of the information is communicated by sound. Most people who can hear can understand all or most of what someone is saying without looking at them. (Which is a reason that it’s possible to understand podcasts and radio programs.)

In spoken language, eye contact isn’t that important. You can communicate everything important without looking at someone’s face. (Unless they lipread and need you to be facing them so they can see your lips clearly.). Eye contact is a popular way to show respect, to show that you’re paying attention to someone, or to show that you’re speaking to them. There are other ways of communicating all of that. 

ASL and other signed languages are different. Facial expressions mean a lot more, because ASL is an entirely visual language. Some important Information that is communicated through sounds in English is communicated through facial expressions in ASL. If you don’t look at faces, you miss a lot. (Much more than you’d miss in English.)

I don’t know what that means about autistic and other neurodivergent signers. I suspect that for some autistic people, looking at faces in ASL might be possible in a way that looking at faces in English isn’t. (Because maybe it just feels like language and not the intrusive eye contact thing.). But I don’t actually know. I also don’t know how the Deaf autistic and otherwise neurodivergent community handles this. 

Does anyone who is more familiar with ASL and Deaf culture want to weigh in? How does signing and participation in Deaf culture work for autistic-and-similar people who have cognitive trouble with eye contact and looking at faces?

m79point7 said:

ug. not enough room in the reply.  let’s try this again

Eye contact is important in ASL, however, I do not think this should stop ANYONE from learning ASL for a couple of reasons:

1) In my experience, the Deaf community is a lot more open to accommodations than the NT, hearing world.  

2) If you can handle looking at someone’s nose or mouth, instead of directly in their eyes, that is close enough that the other person can easily see your eyes and your facial expression.

Again - this is coming from a hearing person, so it is not ‘insider info’ from the Deaf community, just my humble experience and thoughts.

I would encourage anyone who is interested to learn ASL!  It can be a real help when you can’t talk for whatever reason, and it gives you another way to express yourself.  It also opens up a whole new community and culture full of some really awesome people!  And it is fun!  ASL lets you talk to a friend across a room, through a window, underwater, or with your mouth full!

If possible, learn ASL from someone who is Deaf,a s learning any language from a native user of the language is always a much better way to learn.  Books and videos can only get you so far.  

I use ASL without eye contact. It limits me a lot in what I can say or how I can say it, though.

prosthetical said: @goldenheartedrose @mellopetitone

mellopetitone said:

I’m HoH, autistic, and learning ASL.

Eye contact is the usual way the concept is expressed but you don’t need actual eye contact. In ASL is important to look at a person’s face but you don’t need direct eye contact and more than you do with speaking. You must look at someone’s face but you can look at their mouth or forehead or alternative to look at their hands.

Expression is important, but I know it’s a big struggle for many people to make visible enough expressions. If you don’t emote much, your signing won’t be as interesting, like monotone in spoken language, but you can get across your meaning, though it may require extra signing to make explicit what would be communicated in an expression.

Reading expressions is wonderful for me in ASL. Native signers are so emotive that a lot of understanding comes just from emotion, even if you only recognize a few signs. It’s not like spoken English where I struggle to recognize emotions, especially with people I’m unfamiliar with. Signers who emote get across a huge range of meaning that signal very clearly for me.

The teacher saying eyes to eyes but eyes to hands was less meaning to state down the signer, but to tell students that the way signing us absorbed is by looking at the face for information and to express you’re paying attention, while getting the signs from the outer portion of your vision, not the middle.

TL;DR Looking at the signer’s face is required; eye contact is not. Making expressions is hard and many student signers have a hard time; this is expected by everyone and not a sign of failure. For me at least, signers’ expressions are easy to read and very informative. I understand meaning in ASL much better than I do in spoken English.

(Some of this information is not accurate when communicating with signers with other access needs, like deafblind. The access changes depend on the reason and within that also vary from person to person.)

Any Deaf care to add?

Announcing the Real Social Skills t-shirt!  The shirt is slate gray, with text “Noncompliance is a social skill. realsocialskills.org”.  Orders will be open until April 14th, and will be printed and shipped shortly after. (And should arrive around the end of the month.)   https://www.bonfirefunds.com/real-social-skills-t-shirt

Announcing the Real Social Skills t-shirt!

The shirt is slate gray, with text “Noncompliance is a social skill. realsocialskills.org”.

Orders will be open until April 14th, and will be printed and shipped shortly after. (And should arrive around the end of the month.)

https://www.bonfirefunds.com/real-social-skills-t-shirt

Autism Awareness starts with acknowledging that autistic people exist and matter

The strange thing about Autism Awareness is that a lot of people raising it seem to be largely unaware that autistic people exist.

They organize all these Awareness events, and then they don’t invite us. It doesn’t even seem to occur to them that it is possible to invite us. They invite professionals, our parents, and sometimes our siblings. They say they’re raising Autism Awareness, but they don’t seem to realize that autistic people exist and have opinions on autism.

They give fancy Awareness speeches, and they speak as though no autistic people are in the room. They say things like  “Let’s imagine what it must be like to have autism and be overwhelmed with sensory information.” Or “They really need therapy so they can come to do the things that you and I take for granted.” They talk about Awareness, but seem to be unaware that autistic people are present everywhere.

They don’t reference the perspectives, accomplishments, or activism of autistic people. They don’t reference the existence of the autistic self advocacy movement. They talk about Autism Awareness, but they seem to be distinctly unaware that autistic people exist and do things.

So, for April, this is the Awareness I’m raising: Autistic people exist. We do things. Our accomplishments matter, and deserve to be respected and acknowledged. We grow up, and our adulthood needs to be taken seriously. We learn, and our thoughts are important. We are people, and it’s time to stop objectifying us. We have perspectives, and our voices matter.

Meaningful echolalia

Some people communicate mostly in memorized phrases or allusions to stories and events.

It’s actually pretty normal to communicate in phrases and allusions. I think most people communicate that way at least some of the time. For instance, a lot of people make Shakespeare references in situations that have little or nothing to do with literature. A lot of prose and interpersonal communication happens that way.

This is interpreted very differently for some people than others. People without disabilities who mostly communicate in literal language are taken much more seriously when they make allusions and quotes.

When a nondisabled person says “The lady doth protest too much, methinks”, it’s assumed that they’re communicating and that what they say is meaningful. They are usually understood. This is the case even if there are no ladies present and they’re obviously not talking about a lady.

Similarly, when a nondisabled person says something like “A horse! a horse! my kingdom for a horse!”, this is understood as meaning something even if they obviously do not have a kingdom and are known to hate horses.

When someone with a disability communicates in exactly the same way, their communication is often written off as meaningless. It’s often seen as sensory seeking, or stimming, or a persversation, and having no communicative content whatsoever. This kind of communication is often ignored, and also often seen as a problem behavior to be extinguished by a behavior plan.

This is in part because there’s a widespread belief that autistic people are all hyper-literal and only understand literal language. That’s true of *some* autistic people. But there are also autistic people who have the opposite problem. There are people who find it nearly impossible to use literal language to communicate, but who can readily make references and use literary phrases. (This is true for other kinds of cognitive disabilities as well; it’s not unique to autism.)

People who can only communicate in references deserve to have their communication taken seriously. So do people who find references much easier than literal languages. Everyone else is allowed to use references to communicate; people with disabilities have the right to do so as well.

Here’s an example of a situation in which communication is often misinterpreted. Imagine a girl named Sarah:

  • Sarah doesn’t say very many words reliably. She can usually say a few things like mom, food, want, home, and SpongeBob.
  • Sarah watches SpongeBob a lot
  • She wants you and other people in her life to watch it with her
  • She says a lot of phrases from SpongeBob
  • (Eg: “I’m ready!”, “One eternity later”, “SpongeBob, you and I both know you’re just using me as a distraction so you don’t have to write your essay”, “Why is it whenever I’m having fun it’s wrong?”, “I’m ugly and I’m proud!”)
  • Sometimes, the assumption is made that her repetitive phrases are preventing her from developing standard language
  • Or they might think that TV is preventing her from developing standard language and that her access to TV is limited
  • Or they might think that she’s perseverating on SpongeBob in a way that’s preventing learning
  • When maybe what’s going on is that SpongeBob is *teaching* her language and communicative concepts, and she’s trying to use them to communicate
  • If so, she should probably watch more TV, not less
  • And it’s really important for people in her life to listen to her
  • And understand the references she’s making and what they mean to her
  • (Watching the shows with her is probably an important part of that; showing her other shows might be too)
  • If you want someone to communicate, you have to listen to them, even when their communication is unusual

A lot of this post about listening to people whose speech is unusual applies in this situation too.

tl;dr Repeated phrases are often meaningful. Some people with disabilities communicate mostly in memorized phrases and references and allusions to stories and other things. Nondisabled people are taken seriously when they communicate this way. Disabled people who communicate in references should be taken just as seriously. (Even when they don’t communicate in literal language very often or at all).

Thoughts on symbol support and picture support

People with certain kinds of disabilities often need more than words in order to be able to communicate. One thing that can be helpful is the use of symbols or pictures.

Using symbols can expand and support someone’s expressive vocabulary. (For instance, picture symbols on a communication device can enable someone to use words they couldn’t use by typing or speaking).

Symbols can also expand and support someone’s receptive vocabulary. For instance, symbols can be used to illustrate materials, or to explain something to someone. They can also be used in things like powerpoint presentations in various ways.

Symbol support can do a lot of other things that make communication more possible for people with a wide range of disabilities. It’s not just about literacy; literacy-related things are just the easiest to explain.

Something I’ve been realizing matters is that everyone who uses symbols to communicate is a symbol support user. Even people who normally communicate in words; even people who only use symbols to communicate when they are talking to people with disabilities or listening to people with disabilities.

It’s important to remember that communication in symbols is happening on both sides of the interaction.

If someone is communicating with you by showing you symbols, then you are using symbols for receptive communication.

If you are using symbols to explain something to someone, then you are using symbols for expressive communication.

It’s important to keep this in mind.

If you’re using symbols, the symbols are part of the communication. Even if every symbol is attached to one word and only one word. The symbols don’t just tell people what the words are. They also have content, and it’s important to pay attention to what you’re saying with the symbols. They might not mean the same thing to the person you’re talking to that they mean to you. Particularly if they understand picture-concepts more readily than they understand word-concepts.

For example:

Sometimes people might select symbols on communication devices based on what the symbols mean rather than what the words they’re associated with them mean:

  • If someone is putting together phrases that don’t make obvious sense to you, they might mean something by it
  • It might *not* be stimming, random exploration, or that kind of thing
  • It might be intentional communication based on what the pictures mean to them
  • I think it is important to take that possibility seriously (even for someone who also speaks, or also uses words)
  • And *especially* important to take seriously if they’re indicating with body language that they want you to look at the screen)
  • (This is also true if someone is using PECS symbols in a way that doesn’t appear to make literal sense. It might be because the pictures mean something different to them than they mean to you)

Similarly:

  • If you’re using symbols to explain something to someone who needs symbols, the symbols matter
  • It’s not always enough to just pick words, then pick symbols that go with those words one-by-one
  • The content of the symbols can matter beyond literal word-by-word meaning
  • The way the symbols combine can also matter. (ie: the fact that a sentence makes sense in words and each symbol corresponds well with a word does *not* necessarily mean that the symbol-sentance makes sense)
  • The symbols also might not mean the same thing to the person you’re communicating with that they mean to you
  • If someone finds symbols easier to understand than words, they may derive more meaning from the symbols and your tone of voice and body language than they do from the words themselves
  • It’s important to pay attention to what you’re communicating with the symbols you choose as well as the words that you choose

Some considerations for symbol use:

  • Consistency between symbols matters. Symbols combine in ways that make more sense when there’s an underlying logic to the symbol system.
  • Symbols should not be childish or cutesy, even for young children.
  • Because nobody, not even young children, wants to be forced to communicate in cute ways.
  • And some really important topics (eg: abuse, boundaries, sexuality) are decidedly un-cute. People with disabilities need and deserve respectful communication about things that aren’t cute or shiny-happy.
  • Symbols should be comprehensible at a variety of sizes. (Eg: overly complex symbols don’t work well for small buttons on a communication device).
  • Symbols should be respectful, especially when they are symbols of people doing or thinking or being things (eg: protestors should look powerful rather than cute; adults should look like adults; symbols for “choice” should either be abstract or be age-neutral)
  • Symbols should be accurate. (eg: the symbol for anger should not be a smiling person; the symbol for diabetes should not be the same as the symbol for “no sugar”; wheelchair users should have the kind of wheelchairs that individuals own than hospital wheelchairs; the symbol for intellectual disability should not be the same as the symbol for the special olympics)
  • In all of these ways and other ways I’m not sure how to explain yet, I think that SymbolStix is the best existing symbol set.

tl;dr Symbols can be really helpful for supporting communication and comprehension. If you’re using symbols to help someone else communicate or understand, it’s important to keep in mind that the symbols and the words both matter. Pay attention to what you’re communicating in symbols and what they’re communicating in symbols. Sometimes there are things going on beyond the literal meanings of the words that someone decided to associate with the symbols.

Reader suggestions for non-ABA help for autistic children

Content note: I wrote a post a while ago about resources other than ABA for autistic children. Here are three more suggestions from an anonymous reader:


To the mom against ABA:Try getting him lessons in things he enjoys. They’ll teach him structure while letting him know his interests are important to you ( autistic kids’ interests are often discouraged if they have “too much interest” in them)

For the mom not wanting ABA: I’m autistic. When I was young, my parents put me in horse riding lessons and voice lessons. The horse lessons helped me develop communication skills, which in turn helped me communicate with other humans better.

For mom who doesn’t want ABA: Taking voice lessons helped me with pronunciation and tone of voice by teaching me to match pitches, which is how I learned to apply tone of voice by mimicking how others sounded when they said certain things.

realsocialskills said:

I like these suggestions. I think they’re not necessarily for everyone, but could be amazingly good for a lot of kids. Thank you, anon.

Floortime-DIR/Intensive Interaction experiences?

I’m trying to find out more about the Floortime-DIR approach. (It’s a therapy mostly used for autism). 

I’m also trying to find out more about Intensive Interaction, which seems to be at least somewhat similar.

I haven’t been able to find anything written by people who have experienced either approach as a client.

Have any of y’all received either Floortime-DIR or Intensive Interaction therapy? If so, would any of y’all be willing to talk to me about your experiences?